Main menu

You are here

When I Realized

THOUGHT PROVOKER 10

When I Realized

Once upon a time I didn't know much about vision loss, blindness. I didn't know how many people were affected by it, nor how a person or family dealt with it. I knew it could affect some people directly, personally or by association. I knew it had been with us forever, knew that down through the ages it has been feared. I never knew it would affect me, didn't think about it, didn't plan on it. But then I realized, here it was, vision loss, blindness was in my life.

**1. "After my last realization of the onset of blindness creeping up on me and how far it had actually progressed without me realizing came immediate decisions that had to me made. I had to give up my drivers license and find another way to get around. Feelings? scared.
I dropped off my license at the courthouse and picked up my new non-drivers ID. Feelings? Kind of scared and sad. I then proceeded to walk home (a distance of about 25 miles), through parts of town that still doesn't have sidewalks and had to walk on the side of the street with some very fast moving traffic. Towards the end of the journey home (the last 4 or 5 blocks), I had to keep telling myself not to stop because I knew if I did, I wouldn't be able to get back up. Feelings? Panic and anger at myself for doing something this stupid. I finally made it home and laid down on the couch to finally rest. I was sore for 3 days. Feelings? Relieved.

I then went through the process of becoming a pedestrian and finding out who were your REAL friends and the others that really didn't want to be bothered when I needed a ride. Turns out I had very few real friends and found out the only person I could count on was ME! Feelings? Very angry and a bit depressed. Let me go back a bit here. I was (and still am), married to a wonderful woman who I also could depend on. Without her, I'm sure this would be far worse for me to handle then it has been. But there is always that little bit of remaining pride and a bit of independence that remains that sends me out there alone to prove to myself that I can still "make it on my own". But she also works and takes care of the things like taking my daughter to school, picking up little necessities at the store, etc., etc. And I just hate to ask any more of her because I know she feels she's already doing more then her share and I know she's right. Feelings? Sad and a little helpless (for someone that's been on his own since he was 16, let me tell you, that's quite depressing). Then you go out looking for a job. Once they find out you're visually impaired and you don't drive, well, I don't care how qualified you are, there's always that phrase you know is coming; "we'll let you know". They never do. Feelings? Anger and resentment which finally leads you to withdraw from life, sit at home and give up. Losing any self worth you may have had left. As much as your wife or friends try, no one can help you out of this but yourself. At least that was the way it was with me.

This came when I found out from an uncle of some of the programs the Dept of Rehab has for the blind and visually impaired. I signed up and had to leave for a 6 month course downstate. I had never been apart from my Wife or family for more then a day and quite frankly, it scared the hell out of me. When she drove me down to the school and left me there, it was one of the worst moments of my life. Feelings as she drove away crying? Deep sadness and utter terror.

A state "facility" is a hard thing to describe and even harder to get used to. In Alabama there is a mix of blind, visually impaired, deaf and "others". The only thing I can say about this period of my life was that I got through it somehow, and emerged with a much better confidence in myself and a sense of self worth that I had lost somewhere along the way. I forced my way through the training dealing with it day by day. Feelings? Numb and not really feeling anything, more like reacting to situations as they happened. Well, I got through it. I completed a 6 month course in a little over 3 and with some lucky breaks, I was back home working with a diploma in the Business Enterprise Program and a new sense of pride. Work has made all the difference and I now have my own business and am doing well. I attribute me getting through all this to my wife and family and knowing there was someone there waiting for me. The one thing the time at school has taught me. There are a lot of other people out there who have it a whole lot worse then me and there are a LOT of other things out there that are much worse then just being blind. Feelings? Pretty Lucky and very grateful to my wife and family for being there for me.

William Tucker (Alabama, USA)

**2. " I grew up knowing nothing about blindness...I never saw any blind people...Even today, I rarely see blind people. Is blindness such a stigma that those who are affected stay out of the public? We attended a National Federation of the Blind conference in Chicago, I saw thousands of individuals who were affected by blindness. Before meeting my husband, I never gave blindness much thought....It has been part of Bills life forever, and part of mine for 22 years. Yes, it does effect our lives, how much? Depends....We live in an area where there is little transportation, therefore my husband relies on me or taxis for getting anywhere....When his eyesight got bad enough where he couldn't drive, we moved to an area of town that has stores/restaurants within walking distance. Is blindness something I think about on a daily basis? No. Does it effect the way I feel toward my husband, Sometimes... How? Most of the time it is sadness to watch someone lose what little sight Bill does have... Knowing that one day he may be in total darkness. Frustration sometimes, when both of us are in a hurry and we are walking fast or in the dark and he doesn't see steps, or I say "watch out"! and he can't see what I am telling him to watch out for.... Anger for others who have asked me, "You mean you married him knowing he was going blind"??? Is that how people judge you? Do they meet you and only see you as a "blind person"?????

How do others treat me knowing I am married to someone who is "visually impaired"? Do people treat me differently? Yes, some do. Some feel sorry for me. Some think I am some kind of saint for staying with someone who is "blind". Some don't think anything about it....He is just like any guy you would meet. Not sure how my daughters friends think of her dad who "can't see"... I know she is very proud of him, regardless if he can see or not, and is always willing to help him.

I am afraid sometimes, especially when Bill ventures out alone, but knowing that he has to and must maintain some independence I am also afraid of him going totally blind, and how will this affect him and me? I have watched the ups and downs "blindness" has affected our relationship, will it happen again??? We laugh about it sometimes, especially when others "try and help him", not knowing how to guide him, or yell at him thinking this will help.... Our lives are filled with much joy, we are friends as well as husband and wife and are raising a wonderful child and I hope set a great example to her.

I believe most people think they will live "normal" lives. I see people living and dealing with cancer, children who will spend their lives in wheel chairs, and they thought this only happened to others, not them.... We only hear about these people or see them somewhere, we don't think about these things happening to us on a personal basis....

We all fear what we don't understand, or what we are unfamiliar with...All of us are afraid, not just the blind. That it is part of our lives, we deal with it the best way we know how. We are always open for suggestions. I hope there will continue to be more information, more help, and I pray that there will be more medical advancement so that those who cannot see will be able to. I also hope that those affected by blindness can communicate, give advice, listen and brainstorm with others and we can continue to have places like "Thought Provoker" to share our thoughts. Thank God for the computer! It can reach out to so many, and we can find each other and not feel so "alone".
Thank you"

**3. "I certainly wasn't expecting to be blind. I hadn't seem many blind people earlier in my life; a kid in another fifth grade classroom, a blind man selling newspapers on a corner. But at age 33, Bang! There it was, one minute I was 20-20 riding down the highway in a car and next thing I knew I woke up blind. Like can happen in some head injuries, I don't remember the minutes leading up to my crash. But I remember the doctor saying, "you'll never see again." My first thought was unbelief. What was this guy saying, "Turn on the lights, just turn them on!" Next was anger! Next when I could think ahead, I was very uncertain about my future and if I even wanted the one I thought was left to me. But as a Vet I got blind rehab in Illinois and got back on my feet. You know, the government does some good things for its citizens.

After rehab I went back to college, changed professions and found work. Even got married for the first time; another good move; blindness for Margie wasn't new, she was born into it, her father was blind.

Lastly, I'd say that though I have gotten use to blindness, am doing okay by most people's standards blind or sighted, I still get down about being blind. Not often, but it still gets to me from time to time and I get depressed."

**4. "I was fond of a local artist twenty years ago or so. He did pen and inks
and etchings. (No jokes!) One day, he was rumored to have been going blind.
Everyone wanted his work because of the blindness. I remember being
outraged because I was an artist and feared this was my fate also. I
reacted to this in my usual way, not producing anything, then. When I woke
up blind in the hospital, I realized that I had been waiting all my life
for this shoe to drop and now it had. So, what was the next thing? I am
still in this limbo, trying to find my future and place. The pressure is off and the future is mine. all mine."

**5. " I work to assist students at the University of Minnesota with access
issues and other related concerns. A number of these students are blind
and some are newly blind. I think that coming back to college forces an
individual to grapple with some blindness-related issues including
travel, reading/writing skills, and ease in social situations. It's
always exciting for me to see students discover that blindness does not
need to be a tragedy for them and that it does not need to get in the
way of them moving on with their lives. I think those of us who are
congenitally blind need to acknowledge the impact of blindness for
people who are loosing their sight. We often loose sight of how it
affects people. (No pun intended.) It would be helpful for people who
are newly blinded if those blind from birth would communicate a bit
more empathy sometimes. I think we have a tendency to be a bit arrogant
and callous to the adjustment process for people and we need to look at
how we communicate this attitude."

**6. "It was a summer afternoon, I was 4 years old, and my 9 year old brother was
learning how to mow the back yard. He started chasing me with the
lawnmower. I didn't really think about it to much, it was just more
typical harassment from my brothers, but then Mom started yelling at him.
That wasn't really anything new, but for once I paid attention to what she
said. "you know your brother can't see as well as you."
You mean that not every kid has to visit the eye Doctor often. Or go to
other towns to other eye doctors?

Well for four years, I had been presumed equal and normal, from that point
on, presumed equal but unique, and that uniqueness would have to require
creativity and adaptation to keep pace with my brothers.
It must have worked, they still forget I can't see now even though we are
all adults."

**7. "Here's one for you: At our NFB Chapter holiday party, a member told me, "I'm
losing the rest of my vision. I know I should go back to my Braille. Do you
think I should go back to Recovery to deal with it?" Recovery is a support
group that helps people deal with alcoholism. I said, "Why don't you go to
the Commission for the Blind instead?" We had the office manager for the
Commission at the party. She visited a convention two years ago, and was
immediately converted to NFB philosophy. I said to her, "Would you open
Mr. X's case?" She said, "In a heartbeat." Mr. X needs mobility and Braille,
but mostly he needs self-confidence and the ability to focus and set goals.
Isn't it strange that people will keep doing what has worked before even when
the problem changes?"

Lori Stayer (Merrick, New York, USA)

FROM ME: "An interesting perspective. When realizing 'additional' blindness was coming, his mind-set was as it was. Sure Recovery helped him for a very important part of his life, but now he'd need yet another support system for this new source of stress.

I also ask Lori about her first thought when realizing blindness came into her life as a sighted person; one who is now married to a blind man."

"It's not easy to define how I felt back when I met David, but I'll try.
One thing helped a great deal. I had my parents' support. I had dated a
number of other young men, since by then I was 25, and wanted to get married
and on with my life. I knew my career included motherhood, and wouldn't have
wanted it any other way. From the minute my mother met him, while she was in
mourning for her father, she liked David. She told me he was the first man
(mature, caring sort) I had dated. My father, who was a chiropractor,
immediately became active in Lions, and started researching cures for
blindness. He told me once that he thought some day David would be able to
read print. And with the help of an optical scanner, that is now true.
However, there is no cure for what he has.
It never occurred to me to wish David could see. I know that is an odd
statement, but I simply accept people as they are, with the exception probably
of my too-religious daughter, who is trying to change me. We may never accept
one another! But that is a personality thing, I believe. If a person is
tall, how do you wish he would be short? If he is deaf, can you change that?
My response is to wear heels to match (I can't, though. David is a foot
taller than I!), and to learn Braille and/or sign language, or whatever will
bridge the communications gap.

Is there something in my upbringing that made me the way I am? I have no
idea, but my best guess is yes, there must have been! The best thing we can
do for ourselves is to choose good parents!
My mother is the sort who can take a singing group with three members and
increase it to fifty in a few months. When we lived in Baltimore in the 40's
and 50's, she thought it was ridiculous that black people had to use different
bathrooms and swimming pools than white people. One day she had to use the
john quickly so she ducked into the black bathroom. The women in there
expressed alarm and surprise. Her response was, "Why? Do we pee
differently?" The essence of her attitude was that under the skin, we are all
the same, and I guess it wore off.

My dad was interested in exploring new territory in the health field, which is one reason he became a chiropractor. It was an uphill battle, trying to
get licensure, but he fought it for two decades! He was successful, and now
every town around here has six or seven chiropractors. That's not how it used
to be! So his attitude of, let's keep an open mind and try new avenues may
have worn off on me.
I'm only guessing.

How did I feel when I dated David?
First, when we started dating, I wasn't thinking of outcomes. I just knew
we had a great time. From the minute we got together to the end of the date, we laughed together. It didn't matter what we did or were we went, or with whom. In fact, one of the first inklings I had that we were "a couple" was at a party. My friend Dave liked to give them at his house because he had a brother in a wheelchair and it was easier for us to come to him. David and I walked in together, sat on Dave's couch, and proceeded to liven up the party with our laughter. Dave turned to us, and said, "So how long have you two been together?" We were together? Well, of course we were together, but were we together together? On the way home, David asked me to date him
exclusively. I know I was doing the driving, but my memory of the evening has him in the driver's seat. I told him I would think about it and tell him in the morning. The next morning, my other boyfriend called me, and I told him I was considering David's proposal. We both knew it was the beginning of a solid enduring relationship. My now ex-boyfriend asked, "Does that mean we can't go to group
meetings together?" But I was firm. I had a date with David that day to go see "1776" in the city. It was not a memorable play, having only one song that has stood the test of time (I think it was "Mama, Look Sharp."), but the memorable thing about the date was that at the start of the evening, it was snowing lightly, and by the end we were in the middle of a blizzard. When I
told David my ex-boyfriend's reaction, he realized I was agreeing to date him exclusively. He said, "You've made me so happy." Then I sat, and thought, "What am I getting into?"

But to worry about what other people thought? That never occurred to me. Or if it did, it wasn't a big problem. I just assumed people would accept him. That some didn't was their problem.
In the middle of time? Hmmm. And there were people who didn't accept him. My aunt G. thought he ought to wear dark glasses and have a guide dog. Her husband, Uncle H. loved him, though. They had identical senses of humor. (When I was young and foolish,
I'd sworn never to marry a man with Uncle H's sense of humor. So much for youthful promises!) But the strangest reactions came from people who had no business having them.

My landlady told me, "When you marry, it's for a long, long time." I said,
"Good."
My ex-boyfriend and my brother's ex-girlfriend got together and decided after our engagement party (Which we decided to have to make it plain to David's family we were serious)(Only his mother came!) that I planned to dump David and keep the engagement presents.

Another ex-boyfriend pulled me aside and attempted to analyze David's
character and motivations. I told him to flake off.

When David came to visit me at work, (I worked for social services), the ladies in accounting tried to tell him it was the wrong day to visit for Aid
to the Blind.

David's mother and step-father opposed him marrying anyone because it meant they'd lose their source of income. But he did, and they did.

There were positives. I was finally able to make friends with Doreen
DeJong, a blind girl who also worked in Social Services. She was suspicious
of anyone trying to be friendly. We are still in touch.
And I was happy for the first time in my life. I think that winds up being
more important than anything else that happened. Before that, I felt each day
was just another day closer to death. If God didn't intend me to marry, I
would accept it, but it saddened me.

After David and I became engaged, I was
able for the first time to accept that I had a future, that happiness could
indeed be mine, and not just something that I read about.
If I hadn't married David, I'd have concentrated on trying to sell my
novels, and by now perhaps I would be if not world-famous, then well-known.
But that seemed like ashes in comparison with the possibility of making a life
with a wonderful man like David.
Blindness barely came into it.
I realize I'm not like other people. I can't explain it further. I'm not
bad looking, having long dark hair (or at least it was dark then. Now it
depends on how often I visit my hairdresser), and being what David's friends
described as "built." Nowadays the building has spread a bit, but it doesn't
change anything. So the fact he was blind hadn't anything to do with my
looks, or his acceptance of me. Many blind men get outside opinions before
they'll date women just to be sure they're good looking. David asked, but I
don't think it affected his decision one way or another.

So will this help you in talking to others in the same position? I don't
know. Maybe you can tell them to look below the surface at the person and his
character, and to realize that blindness is not and should not be the deciding
factor in whether or not to build a relationship. Building a relationship on
physical characteristics is something like laying a foundation on sand. The
waves wash in, and the foundations crumbles as time goes by.
Think about it.
Lori Stayer

**8. "When I was a little girl I spent a lot of time being examined by eye
doctors. None of them could discover why I was going blind or how to
prevent it. It was a mystery that wouldn't unravel for many years.
When your a child, you think that everything will continue on as it always
has, and when it doesn't, your either devastated or find it unremarkable.
When I finally went totally blind at ten, it was very much like every other
day. Kids are resilient. It seems, that those people, who went blind at a
later age had a harder time adjusting. I don't relate well to the phrase,
"Lost their vision", that sounds like they might find it again if they just
"Look" hard enough. There must be a profound lonyness dealing with such a
traumatic thing when your past the age of parental dependency."

Patty Svendsen (Omaha, Nebraska, USA)

**9. "I was a forty three year old professional, divorced and living a pretty
good life when my world was rocked by something that was totally beyond my
vision for my future.

I had recently finished chemo when I began to have problems seeing. I just thought it was middle age. Just one of those things. However, it soon
became apparent that I was to begin a journey into uncertainty. I was
diagnosed with a rare disease, Cancer Associated Retinopathy (CAR). No one
had ever heard of it. There were only 355 cases in the United States at the
time. My doctor looked me in the face and said Miss Ray, you're going to go
blind, go home and make preparations. I went home and sat.
I did not know how to be blind.
Thus began my journey into educating myself in the world of blindness. It
was not the fear of blindness that propelled me. It was the reaction of
others, and the fact that I did not intend for this to change the quality
of my life. I am now legally blind. I have some sight but this will
decrease with time.

I have learned on this journey that everything changes, whether we want it
to or not. I could no longer drive so was cut off from my normal routine.
There is no public transportation in my town and one cab company. And quite
frankly, I had only seen one blind person that I could recall.

One day I picked up the local paper and read an article about a hike and
bike trail that cost in excess of 100,000 dollars. I thought to myself, hell
and I can't even get there. I went to my first ever City Council Meeting
the next week. I began to ask questions and when their answers didn't
satisfy me, asked more. I learned quickly that when you begin to ask
questions, and expect accountability, the barriers go up.

I have since become quite active in trying to bring about change,
acceptance and improve the quality of life for the blind and visually
impaired in our community. I have inundated the offices of every official
possible, inclusive of senators. They will know who I am eventually.
This has been a learning experience for me. One filled now more with
determination rather than anger. I have lost friends who could not cope
with my loss of sight. I have angered city officials because I expect
responsible leadership and logical answers. But I have gained much through
my vision loss. I have gained the knowledge that subtle discrimination must
be confronted, and that I must stand up for my convictions. This has truly
been an eye-opener for me; A middle-aged, middleclass house wife, mother and
grandmother."

Jimmie Ray (despite the name, I am female)
Texas, USA)

**10. "My transition into blindness began with the word from my sister that her
son, eight years younger than myself, had been diagnosed with retinitispigmenttosa , and the Boston Eye and Ear Hospital wanted myself and my two
brothers to come for an evaluation. My oldest brother Gerry was already
blind from RP, but I did not think for a moment that I had it. My vision
was well below average, but with contact lenses I was planning to pursue my
vocational interest as a draftsman, and my eye doctor felt that my vision
had improved enough that in a few months I would be able to obtain at least
a restricted driver's license.

The news was stunning, but yet by the end of the examination when I was told
the results, I had already figured it out by the behavior of the doctors,
and the way they had compared my eyes to those of my brother Gerry, and the
fact that they were not saying the same things about my brother Lorin.

Having a brother that was blind might have been something of a help in
taking the shock, but on the other hand his life was not exactly a positive
role model for me. He had dropped out of college, worked in a sheltered
workshop, and his marriage was not one that I would have wished for. I was
very much alone at this point.

My eye doctor kept talking about preserving my vision, and using it to the
greatest degree possible. I went through rehab, and they kept telling me
that I needed to concentrate on using the vision I had to the greatest
degree possible as well, and that as I lost vision I could come back for
more training. They said that it was critical to "keep your visual memory
alive"".

My brother became my negative role model, I finished college, and above all
else I tried to hold on to my vision. I planned my life on my present
level of visual function, believing that it would stabilize as my doctor had
said it probably would. It did finally stabs at a very limited level, but
until then I was caught up in reorganizing my life every time it got worse,
which was about every three years.

I kept looking for work in my new chosen field of interest, social work, but
it just wasn't happening. I finally took a job with the IRS because they
hired blind people to work the front line telephones. If you think they are
difficult to pay your taxes to, you should try working for them, especially
when you don't have the non-visual skills you need to do the work.

Then some years later I had the chance to get a job as a cane travel
instructor, a job that I had always been told that blind people could not do,
but it meant going through a program where you wear a blind fold or as we
called them sleep-shades, eight hours a day through the training. I hated
the idea at first, but by the end of the program I was firmly committed to
the idea. Suddenly it didn't matter what happened to my vision, being
blind, and coming to truly understand what this means was one of the
greatest events in my life.

My brother Gerry passed away last year, of course I never told him what I
had felt about the way he had lived his life, but by the time of his death I
had come to have a very different feeling about him and his life. He was
not such a negative image to me, but more of someone I wished had had the
chance to learn the truth as I had. I no longer dreaded blindness because
of what I saw in him, but I very much understood that his life was what
others had convinced him it would have to be. He became what others
believed was appropriate for a blind person to become, and he had done the
best he felt he could do with the lack of information and out right lies
that had been presented to him. I was lucky, I happened to find the truth,
and even though I wasn't willing to accept it at first, it finally sunk in.

The best resource that we have as blind people is each other and ourselves,
and being blind is as proper and wonderful as any other way of life."

Jeff Altman (Lincoln, Nebraska, USA)

**11. "I've been reading this latest thought-provoker with a great deal of
interest. Many people have written about losing their blindness later in
life, or meeting and marrying someone who is blind. I offer another
viewpoint...a very disturbing one. What happens when you are a guy who is
blind from birth, raised in a positive and supportive environment and has
close ties with friends and groups of blind people who are positive and
supportive? What happens when you yourself are a positive, upbeat person
with a good outlook on blindness...and that positive outlook slowly starts
to crumble away? Maybe some things happen in your life that cause you to
start to wonder if blindness is really actually a handicap instead of a,
"neusance" as some people like to call it. You suddenly start to think
that there are, indeed, limitations all around you. The "good philosophy"
starts to have an empty, hollow ring to it and you start to think that
much of this independence that we strive for is only an illusion. You
start to see the giant schism of understanding that exists between the
totally blind people and those who are sighted and even visually impaired.
You start to question your own future...things like marriage, your career
and your real goals in life. Everywhere you look, you see walls of
ignorance and limitation.

This may sound a bit melodramatic, but it is exactly what I am facing at
this point in my life. So when you ask, "how does blindness affect you,"
I have to answer, "it ain't no hill of beans...in fact...it's a giant
mountain." Faith is something that has become very important to me and
the loss of it in this area of my life is very scary. It is faith, more
than anything else that must drive us forward when we reach those
mountains that seem too high for us to climb is."

Sincerely, Ted E. Bear (USA)

**12. "What follows is in short how my wife and I experienced when we realized
that we were blind:

I was born with a little more than light perception. I could sort of make
out pictures if I held them right up against my nose, but I've always been
colorblind. When I was six years old, my parents took me to the School
for the Blind in Worcester. At the time we were living in Cape Town and
Worcester was about 75 miles from Cape Town. (I say, "was," because there is
now a tunnel through the mountain which makes the distance substantially
shorter.) When we got to Worcester, my dad stopped the car and made
inquiries from a pedestrian as to how to get to the School for the Blind.
My dad got the directions and we moved off again. Somewhat puzzled I asked
my dad why he was looking for the School for the Blind? Who was blind?
Somehow we'd never really discussed the matter of blindness and in my
child's mind I'd always thought that sight improves as one grows up. I
thought all children saw much less than adults. Somehow, though, the
knowledge that I was blind didn't really come as a shock, neither was it
traumatic. I suppose I was so used to seeing as little as I did, that I
sort of accepted it as the norm.

For my wife, Martie, the whole thing was rather more traumatic. She was
born sighted. When she was five years old, she had an accident with a
broken lamp glass which stuck into her eye. At that time they were living
on a farm out in the country in a little village called Niekerkshoop in the
Northern Cape. Unfortunately she didn't get proper medical treatment
quickly enough and a month later she was totally blind in both eyes.
Fortunately her parents had the wisdom not to make the universal mistake of
trying to protect her from everything around her. She had to do her share
of domestic chores and learned to cook, sew and knit, etc. and is very
independent today. Because she could see for five years, colors are still
very important to her; she still has a good memory and conception of
colors.

The organization PIVIC (Pre-school Intervention with Visually Impaired
Children) is quite active in South Africa and they help and support parents
with little blind children."

Christo de Klerk (Alberton, South Africa)

**13. "I was a premature baby and my blindness resulted from being given too much
oxygen while in an incubator. So, I never had to "adjust" to my blindness,
it was my parents who had to do the adjusting.

I am one of the lucky ones who was blessed with loving, supportive family.
My parents encouraged me to try new things, and to do as much as I could
for myself. They felt that since I would have to learn to live in a
sighted world, I should attend public school.
My brother is 14 months younger than me, and we were not treated any
differently as children. I don't remember this incident, but my mom told
me about it later in life.

My parents were very concerned about how to tell me that I was blind.
They had no idea what to do. One day, my mom was in earshot while my
brother and I were playing. She said I went to reach for a toy and
couldn't find it. He told me that he would get it for me,. Then he told
me that I saw things with my hands, and he saw things with his eyes. My
mom came into the room then, and I guess her voice sounded funny, because I
put my hand on her face and asked her why she was crying. I never needed
any further explanations about my blindness.
I believe that the blindness isn't the real problem. No matter how much
you love and support your blind child, parents can never protect them from
the hurt that comes when other children begin to treat them differently.

I vividly remember being about six years old. I was playing with a group
of neighborhood kids. One of the parents came and offered to take all the
kids to the park to play baseball. They all told me that I couldn't go.
When I asked why, they told me that I couldn't play baseball. I still
remember being so hurt and confused. I wasn't really sure what the heck
baseball was, and I had absolutely no clue why they said I couldn't play
it. It's strange how I remember this so well after forty years.
But my parents did their best to treat me like a normal child. My brother
and I got bikes for Christmas one year. I was able to see or sense the
bushes and houses, so I could stay on the sidewalk. Well, most of the
time, anyway. I know I had more than my share of scraped knees, bumps and
bruises, but my parents took this in stride, too. Some neighbors actually
threatened to report them to the authorities for allowing a blind child to
ride a bike unaccompanied. They accused my parents of being cruel and
unfeeling.
But I'm grateful for the way I was raised. We still laugh till this day,
because when I was little and used to get on my mother's nerves, she'd tell
me to go look out the window and see if dad's car was there yet. I'd
always laugh when she said that to me. She said she honestly did forget
that I couldn't see at times.

I guess if I had to give advice to the parents of a blind child, I'd have
to say love them, be there for them, and teach them to be as independent as
they can be. Encourage them to grow and try new things. And, most
important, don't shelter them. They will be hurt and depressed at times,
but this will help them to become strong independent people. Just make
sure you're there to help them pick up the pieces when they need you most."

Dolores Myers (USA)

**14. "I have read with interest the many responses to this latest
provoker. Sometimes I am so interested in the responses of others I
forget to send my own.

I was born blind. My sister was born 14 months later, also
blind. The doctors were so concerned when I came along that they kept my
mom in the hospital for two weeks. When she didn't lose her mind, as
they expected, they sent her home with me. I realize that they kept moms
at the hospital much longer back then but two weeks was excessive. She
was made aware of my blindness but said she was not as concerned about
that as if I had been mentally retarded. She didn't really know what to
expect of me, but she knew some disabled people who tended to expect too
much help from other people and she didn't want me to be a burden to
anyone. She handled things until I was about four months old. Then she
began to wonder about my future. Somewhere along the line, after she
panicked and told the rest of the family to stop panicking, she decided
that she expected me to get a good education, get a job and marry and
raise a family if that was what I wanted to do. In other words, she
expected me to be like anybody else. She knew I wouldn't drive or read
print but figured there would be ways around those problems.
My mom didn't have to wonder about me for very long. I was not
the "couch potato" type unless I was not feeling well. In fact, she
began to be concerned about taking me anywhere because I was such a
little snoop. I found my way around in the homes of our friends and
sometimes embarrassed mom. One day, as my parents and their friends were
playing cards, I appeared with something in my hand. In front of my
parents and friends "males and females" I asked "Mommy, what's this?" It
was our friend's bra.
Another time, in the same home, Mom came upstairs to get me so we
could go home and she found me sitting in the middle of the bed with pink
Kleenexes surrounding me-and an empty box. Oh well. It was evident that
this blind kid was going to find out what was in her world.
I really did not know that there was something "wrong" with me
until I was in first grade. I had been put to sleep several times with
ether so the doctors could find out what caused the blindness and see if
they could fix it. I had been taken to a pre-school clinic at the school
for the blind the spring before kindergarten and was locked in a room
because the house-mother couldn't handle it when I would not stay put. I
remember her saying that the "totals usually stay put" but I didn't have
a clue what she meant. She was a control freak big-time. Sometimes when
relatives came to visit they seemed to worry when my sister and I moved
around much and they tended to talk to us in a more syrupy, and sometimes
louder, voice. Mom and Dad read to us and I couldn't figure out where
the words were coming from because I only saw white on the pages unless
they were colored. Even the colored ones just had blobs on them to me.
I didn't understand how they knew it was a picture of a cat or bird or
tree. I knew I couldn't see vary well but I didn't know what that meant.
After all, I rode a tricycle, climbed retainer walls and porches and
jumped, ran on the sidewalks, sometimes my upper body getting ahead of my
legs and-plop-bloody lip! But other kids were doing all that so what was
the deal?
I had repeated illnesses, some of which became chronic and I
eventually began to experience orthopedic problems which have intensified
into adulthood. I really did not know then that later in my life I would
be told that there was something wrong with me not only because I was
blind, but also due to other conditions. I didn't know that some of those
who would treat me as unacceptable would be some other blind people who
would insist that I was not okay unless I was "only blind."
Even as those clues were coming into my sub-conscious, I still had not
really been aware that I was "less than" until I got to first grade.
(Somehow it still slipped by in kindergarten. I was easily frightened of
some things given some of the past experiences, but still I didn't know
that people were expecting less of me.)

In first grade, some of the kids had reading books that were like
those Mom and Dad had read to me. I had already begun learning braille
and had some Braille books. However, our teacher Brailled our math
problems and spelling tests. I noticed the difference but still didn't
know that there was a "problem" just that print books was more available
than Braille books. I wouldn't know until later that some people consider
Braille to be shameful and unequal to print.
We began to have art classes. Next to music, these were my
favorite times. We didn't have very many of these classes and I began
to observe that the students using the print books were doing more in art
than those of us who had Braille books. I wanted to do the same things
and my teacher said I couldn't do some of it myself because I couldn't
see. I told her I could see. "I can see. You're wearing a pink top and
you have something shiny in your hand." She asked what kind of top she
was wearing and I didn't know. She asked what was in her hand and I
didn't know, but thought it might be scissors since we were cutting
paper. She said that was a good guess but I wouldn't know by looking at
anything what it was because I couldn't see. I argued that I could and
cried. She made me stay after school because of that. She didn't
explain that people have different levels of sight and that some of the
kids couldn't see anything. When she said I was totally blind I didn't
believe her, though it was true. I couldn't see shape, texture or colors
if they were mixed. I could only see things a little if they were almost
in my face. I couldn't see print on a page or what peoples' faces looked
like. I thought everyone saw that way and just didn't get it. I did well
in the art projects that I was allowed to do, in spite of the teacher's
discouragement.

Later that year, during indoor recess, my best friend and I were
playing with blocks. I asked her to stack them by color. I was shocked
when she said she couldn't do that because she couldn't see colors. I
did it for her the first time. Then I figured out which print letters
and animals were of which color from one of the kids who could see some
and told my friend. We memorized them and then I had her stack the
blocks again. Notice this time how I really was beginning to
understand-from other kids, not from my teacher.

We always had light lunch around three in the afternoon. We
would take turns as two of us at a time went downstairs to the kitchen to
get our tray and bring it back up to the classroom. I realized that I
was always assigned to one of the kids who could see better. Me and my
big mouth, I asked why I couldn't go down with Rose Mary (my best friend
who couldn't see colors). I was told that we had to have someone who
could see with us. I argued and cried again. In the middle of my upset,
I accidentally bumped a glass of juice and it fell, crashing to the
ground in a sticky mess. You know where I was after school. Not only
had I questioned her, but she was convinced that I had had a tantrum.
The little boy who had gone with me that day told her it was an accident,
that he saw it, but she didn't believe it.
This teacher had been so effective at lowering my self-esteem
that some of the earlier experiences began to fit into the picture she
was painting and my self-esteem plummeted. My second-grade teacher, who
had me in kindergarten, too, noticed a problem right away and wondered
why I was so different now. What happened to her curious little girl?
She sometimes took me aside to work on extra art projects, let me read
extra books, and allowed me to learn to use the slate and stylus as well
as the Brailler, though this was not scheduled to happen until fourth
grade. I wasn't a clumsy, stupid, blind dummy in her class. I was a
person. She told me that I was very intelligent and creative but there
would be people in the outside world who wouldn't believe it. She told
me I needed to learn to stand up for myself. Arguing was maybe not the
best way to stand up for myself, but she admired my sticking to my guns.
I don't think she ever insulted my intelligence, creativity or even my
person-hood. She brought brightly-colored things into the classroom and
if I didn't notice them, she made sure that I did. She knew that bright
colors, like music, made me happy. That was the best school year I had.
I had lots of chronic illnesses from early childhood on. I had
almost constant pain in my right eye (the one I could see a little from,
and realized that this pain was not normal by the time I was in third
grade. One day, I was running through the auditorium and I slammed
against a "mean old post." I was struck above my right eye. Swelling
occurred and the glaucoma pain intensified. I couldn't handle any amount
of light without extreme pain. The teacher turned off the lights in one
half of the classroom and moved our desks around so that I was not facing
the light but not separated from the other kids. The staff put a dark
green tablecloth on the table I sat at in the dining room. I was taken
to an eye doctor who insisted, like all the others, that I could not see
at all. Mom argued with him and asked me what color her coat was. I
said it was brown. She asked what color her purse was. I said it was
brown. The doctor said, "Well you know these kids have good memories.
You told her what color those things are and she remembers." I said that
wasn't true. He was already impatient with me since I winced and
squirmed so as he would shine his awful flashlight in my eye. He raised
his voice and said, "Young lady! If you are going to fight me, we'll
take you upstairs and put you to sleep to do the rest of the
examination." Having already experienced ether, this was the worst thing
he could have said to me. Mom said it was time to go. In the car she
told me there was no upstairs from the office we were in.

They had talked about having my right eye removed but Mom wanted
me to see colors as long as I could. My parents decided then that my
right eye probably would have to come out some time, but they would leave
that decision up to me. I made that decision in 1978 as I was so
distracted by the bright fluorescent lights at our national convention in
Baltimore that I could not concentrate on what Dr. Jernigan or anyone
else was saying. The pain was excruciating and I later learned that my
eye could have ruptured any time in those past ten years.

When I was in Junior High, the school staff was taking pictures.
They left me out because "Laurie's eyes don't look good." Adolescence is
not a good time to hear that. I concluded that since my eyes were ugly,
so was the rest of me. When boys began to be interested in me, I didn't
understand why, after all I was ugly. I remember when my sister and I
sang at a church one time, one of the women said to another "They're such
pretty girls it's too bad about their eyes." Hmmmm.
In high school, we began to have the privilege of going off
campus without adult supervision. Once again, I noticed that some of us
were not allowed to go off campus unless certain kids went with us. By
this time, I was not alone in my protest. We went to the Superintendent,
telling him this wasn't fair. He thought about it for a while and
finally said that we could go with another blind kid or alone, if we knew
our way. How many times had we gone off campus to the little grocery
store to get goodies? Why wouldn't we know where it was? By my junior
year we did this and did fine. The only problem was that we were not
using canes. I had been given one in seventh grade but it stayed in the
closet most of the time. Though they showed us how to use them, we were
never allowed to use them on campus. Weird! When I suddenly was
expected to use mine all the time as I was entering college, I resisted.
Teen-hood is not a good time to suddenly expect a kid to carry something
as "different" as a cane. However, I had an interesting experience that
taught me never to feel ashamed of a cane again. I was learning my way
around the University campus. My guidance counselor and I were working
on one of the older buildings where I would have Spanish class. I
started up a flight of stairs. As I neared the top, suddenly my cane was
out in thin air. They were doing construction. If I hadn't had that
cane I would have gone down who knows where. Usually I am, even to this
day, grabbed or yelled at "watch out! Watch out!" sometimes over nothing
unusual. This particular day, however, my instructor kept his mouth shut
and trusted that I would know. Thank God I did! Black Bart (my cane had
a black handle) was my friend after that. Sometimes I still call my cane
Bartholomew after that cane. (Of course anyone who knows me can figure
out how I chose that name. After all, it has "mew" in it.

It wasn't until I began my studies at the University of Nebraska
that I really began to experience being excluded from normal activities.
In fact, as I was choosing my classes for my first semester, Mom and I
overheard my advisor in the next room say to a colleague, "Let her take
whatever she wants. Let her have her year." Were we ever mad! Several
years later I wished I could have held my Phi Beta Kappa pin in his face,
but I didn't.
Since then I've met resistance with graduate school, church
choirs, trips that various groups were taking and they thought I would
get hurt, parties, etc. One time a woman in choir said I couldn't
come to a dress party she was having because "well, you couldn't afford
them anyway." How did she know? My husband at that time, also blind,
was a government worker and I might have possibly been able to afford one
but I never had the chance.
It's been this way my entire adulthood. I've had trouble getting
jobs for no good reason. When my daughter was born some people panicked
about whether we could raise her or not. So many self-esteem bashing
experiences have happened that sometimes I do seem to lose confidence.
However, when I finally joined the National Federation of the Blind, I
suddenly found a way for the more positive messages from my Mom, my
second-grade teacher and several others to sink in. I began to at least
secretly suspect that down inside, I was really okay. When I realized
that the One who created me obviously didn't expect less of me (after
all, I had been given many talents and skills) I really began to believe
that it was not a good thing to allow people "out there" to mess with my
self-esteem. Since I had such blatant negative experiences in early
childhood, I still tend to go into old habits even though I know better
inside. Even if I don't "make the mark" by someone else's standards,
usually too low or too high, knowing the difference deep inside has been
a lifesaver. I have a husband now who understands that I was
conditioned to feel like I am "less than", but he sees the real me on the
inside and knows that I am not being hypocritical. I really did learn
that it is not okay to be blind and it is okay to be blind. What really
is important for me is to learn to balance these two opinions of myself
since erasing the negative side may not be able to happen totally in my
lifetime. I am not doomed by the negative conditioning but neither am I
as free as those who were taught, right from the beginning, that they
were okay. I am always so glad to hear of young children coming into the
Federation since I know this will allow them to have a positive
self-image at a younger age. Learning that we're okay before adolescence
really can do wonders. When those kids survive adolescence and go out
into the world they can just say "oh yeah?" to those who doubt them and
just stroll, white cane in hand, right past them saying (perhaps to
themselves) "I know who I am and you're not going to stop me."
My journey may sometimes be fraught with obstacles but I'm not
really the Quitting type. I may need to be the Resting type perhaps at
times, but I am still that curious person who believes that this is her
world to and I will continue to explore it in whatever ways work best for
me. Best for me? That's an interesting concept."

Laurie Merryfield (Seattle, Washington, USA)

**15. " Following a car accident, at the age of 31, I awoke from a two month coma to take in a vision of a dark maroon curtain across my eyes, which was and continues to be purely a mental image. I actually thought I had injured my eyes and there was a dark maroon light, like a photographer uses in the darkroom, that would not damage my eyes any further. I didn’t mention the maroon lights to any or my family or the attending medical staff, as I figured it was as obvious to them as it was to me. They all moved around in the darkness, but I figured this was just like someone does in the middle of the night when they go to the bathroom. A few days later, while still in I.C.U., my father had a small TV so we could watch the Dallas Cowboys game, and he asked me if I saw that last pass. This was when we both realized the accident had left me blind. It led me to many questions, the first of which was why didn’t any medical staff notice this while I was in a coma? Also, I wanted to know what had caused the blindness.

My remaining six weeks in the hospital were spent in more of a great deal of shock than anything. I had to focus on learning to coordinate eating utensils and felt really clumsy. The first successful attempt at feeding myself was a cheese omelet, but it was very cheesy and got a little stringy. It got to be very frustrating trying to get the food right to my mouth and not hitting my cheek with the fork. The other things I was having to deal with due to my medical injuries made it easy for me to not focus on being blind, except at meal times.

Just before leaving the hospital after a three and a half month stay, I had my first opportunity to see an ophthalmologist. He ran several tests, but he would not tell me any cause for my blindness and would only tell me that when I got to the rehab center to learn how to walk again, I would also need to see a neuro-opthalmologist. Another three weeks passed and I finally saw the neuro-opthalmologist, who gave me my long awaited diagnosis of how I went blind. I had received a head injury that caused my head to swell, severing the optic nerves.

Throughout the time of not knowing why I was blind, I continually insisted that this condition was temporary and that I would see again. In my mind, I made sense of this as my eyes were still waking up from the coma and it would be any day and they would be just fine. I would not take this doctor’s opinion that this was a permanent condition. Two months later, I traveled 4 hours to see another doctor in Houston. I was walking on a support cane and was also using it as my mobility aid around the house. I used the cane for support outside the house and traveled by sighted guide.

When I went into this second doctor’s office, I figured he couldn’t tell me anything I hadn’t already heard, that when I left I would be no worse than when I walked in. This doctor proceeded to give me my most thorough exam yet and I thought he had hit me in the head with a brick when he said very directly, "You need to get your moxy about you and learn how to live your life as a blind man." It shook me, but his words were exactly what I needed to hear. My father and I were both crying as we walked out of the office. On the long trip home to my parent’s house in Central Texas, I made the decision to get into the Criss Cole Rehab Center to get rehab training. This was a major step forward for me, as before this, I would not even consider this idea. After all, I didn’t need to be around a bunch of blind folks. What could they teach me?

This decision to go to CCRC was the springboard for everything I have been able to achieve for the last four and a half years.

The things I have been able to do have certainly surprised me. I often tell people that I have accomplished more in the five years I have been blind than I had ever done in 31 years of being sighted. No doubt, attitude has a lot to do with what is possible, but this is true for all people, blind or sighted. Even with a positive and confident attitude, I still have those bad days. The initial frustration I felt at getting disoriented around loud surroundings still have the same effect. The early days of anger at clipping a corner I am totally familiar with in my own house still rears its ugly head.

Prior to my accident, I have never known anyone who was blind. I had a friend whose daughter was born blind and when I heard about this, I thought, "That poor girl. She’ll never have any kind of life." After I came out of the coma, there was a volunteer at the Lubbock hospital who was a savior for my sanity. She was able to answer a lot of questions about how I would do things and she was so eager to show me these things. I laughed when she told me she had a Braille compass. I thought, "Yeah, right. Blind people don’t use compasses." I didn’t have a clue at that time. I have learned so many things since that time, and with the loving support of my family and friends, have come to realize that my friend’s daughter wasn’t someone to be pitied, but should be respected as a person in her own right, just as I want to be."

Ron Graham, (Houston, Texas, USA)

**16. "couple."I never knew a blind person, can't remember even seeing one except on
TV until I was over 20 years old. When I met my husband-to-be, Pat, he
drove a car and held down a good job. After we had dated a while, he told
me that he was told that some day he would go blind. We both thought that
it would be when he was an old man. It would happen a long time in the
future. After we married, I researched all the avenues and learned all I
could about Retinitis Pigmentosa. I asked the doctors about having
children and if they would inherit it. The doctors told me, to the best of
their knowledge, that any children we had, would not have it. So we made
plans for a normal life, careers, owning a house, children, etc. We did
join the Southwest Chapter of the NFB. We met many blind people and
visually impaired. Many of them were great role models. It was my first
experience with blind people. It was a good one.
When we had our kids, and the two girls were getting their physicals to
enter school, we discovered that they were both going blind with Retinitis
Pigmentosa. The "future" was now upon us. We learned to be the parents of
visually impaired kids. The possibility of Pat's blindness also became
real. We began to prepare more for that day.
Pat is now what I call totally blind. He sees light, but there is no
useable eyesight. But, it does not matter to me for any reason other than
I am concerned for his comfort. He has a great sense of humor, he is a
caring person. He does whatever he can to make life easier for me. He
works hard and does not feel sorry for himself. All his good
characteristics, the ones that are truly important in life, are not
affected by eyesight. We would probably have more money if he were not
blind. He would still be president of a company like he was before. But
then we probably would not have the time to spend together. I don't feel I
had to give up anything to marry him. I have never met a person, sighted
or not, that I would rather be married to.
The NFB had people who were a good role model to Pat and to the kids.
We now have 4 and they all inherited RP. They have learned that there are
concessions that have to be made, this is a world geared more for the
sighted, but they are handling it well. They are all preparing for the day
when they will not have eyesight, if that comes.
If I could change things in my life, decisions that were made,
circumstances that caused pain and stress, it would not have to do with the
blindness. There are other things that have caused us the problems."

Rory Conrad (Dunlap, Iowa, USA)

**17. "I hope that my story will give others wisdom. When I was six years old,
Doctor Eagle told my parents, that I would be totally blind someday if I
lived long enough. I always joked about it, and tried not to live long
enough to go blind. I have Retinitis Pigmentosa. I saw very good, to my
way of thinking until of a sudden I couldn't see horizons anymore.
During my school days I had 20/50 vision. Which is really not bad. I
figured if I am going to be blind, I better go to work right now while I
can make lots of money. From that time on, I worked almost two jobs all
the time. I thought that once I was blind, I wouldn't be able to work
anymore. I made good money and held down respectable jobs. I had hoped to
get my own business going so well, that all I would have to do was
supervise. The best plans of mice and men soon come to naught. I was in a
very serious accident and by the time I recovered from that, I had gone
blind. If I could have done anything different to change my life today,
instead of working so hard, I would have gotten an education so that I
could work after I was blind.
The Iowa Department for the Blind is presently training me to operate a
computer system so that I can work at a local company.
Faith in God gives me a really good outlook on all phases of life.
I actually can enjoy life more than most sighted people, I have the time to
do things that are fun. I can be here everyday for my wife and kids."

Patrick Conrad (Dunlap, Iowa, USA)

**18. "I realize that I already sent you a very long response to this
thought-provoker. However, since it has taken on the character of
giving advice to parents of blind children, something which I did not
read into the original provoker, I have more to say. I realize these
things take on a life of their own which I find totally fascinating.

As I mentioned earlier, I did not understand that I was blind
until first grade. My parents had told me I didn't see very well. They
told me I would go away to school where I could learn to read. They said
I would read Braille and I understood it was a system of dots that I
would be able to feel. Mom sounded excited about all of it except having
to leave me at school. My parents never spoke of blindness, Braille or
other related matters as being negative in any way. The negativity
around it I learned from outside my family.

I remember my mom telling me that she would get mad at some of
the parent meetings at the school for the blind because so many of the
other parents just let their blind kids sit around in the corner sucking
their thumbs, reading or perhaps playing a musical instrument. They were
not expected to do chores or play games with their siblings in which they
would be moving around. They spent little time outdoors. I am glad all
that didn't happen to me. I doubt if it would have though because I was
so curious. How we get started in the world not only depends on how our
parents perceive blindness, but the nature of our own initiative. Kids
in general are different and there is no one way for a blind kid to turn
out which is considered "acceptable" in my book. I know that the rehab
establishment tends to have guidelines of what is considered
"successfully rehabilitated" but I am not interested in carbon copies and
I know that some parents can be concerned when they see blind people of
all kinds and wonder how their kid will turn out. Sometimes certain
blind people are presented to parents as good examples and then this is
what parents expect. I think it is better for parents to be exposed to a
variety of blind people, kids and adults, to find out that blind people,
like sighted people, come in all kinds of "packages" and that this is
okay.

I am concerned about this image thing since I have a sighted
daughter who tends to think that everyone should be molded after model
magazine and TV commercial images and if we appear to be less than that
we're not acceptable. And you know that blind people are not routinely
put in commercials as ordinary people. Parents really need to let their
kids be ordinary people, not super-blind-guy or whatever; there's too
much stress and perfectionism in all of that. I remember being told that
if I was going to succeed, I had to be better than anyone else at
everything. Of course I was very talented and intelligent but still I
knew from the time I was little that I was not better than anyone else.
Now I am glad I never thought that of myself. I have met some blind
people who think they are among the "chosen few" and I am not impressed
by that.

I know there have been articles written on how to have blind
children dress, hold their silverware, and so forth as if they are going
to Miss Manners' school or something. I believe kids need to learn
whatever people around them are ding. The silverware thing is important
but the most important thing about dress is that kids find out from other
kids what they are wearing since that is what matters to them. Blind
kids do not have to be overdressed, bandbox style, etc. How many
friends would they have? Some of this, I realize, depends on where one
lives. Back East people may dress up more but thank goodness out here
they don't. My sighted daughter wears jeans most of the time. I have
let her wear whatever she wants as long as she is clean and covered in
the right places. She has a good sense of what she likes. I did not
force her to wear dresses all the time like we had to back in the fifties
and sixties. Blind parents need to keep up with the fashions with their
kids, too. It goes both ways.

I have known of situations in which the sighted kids got in
trouble if they messed up but the blind kid in the family was not dealt
with and would end up really spoiled and unable to relate reasonably with
other people. The thinking around that was that the poor thing had such
a "handicap" that the parents just let things go to pacify the poor
thing. Blind kids need to have the same rules and responsibilities as
the other kids. The blind kid may do some things differently, but needs
to be treated as an equal member of the family. From some of the things
I've heard, this doesn't happen very often because parents just don't
know any better.
I have heard of situations in which siblings will hide their
sibling's blindness from others, feeling ashamed. They don't want their
friends to come to their house, etc. This issue needs to be dealt with
head-on because it is not shameful to be blind or to have a blind member
of your family. My daughter, at seventeen, is going through the shame
thing but so far her friends think that is rude and they seem to be okay
with me. I know that when she goes away from college, she probably will
not tell her new friends about her blind parents at all and try to run
away from the whole thing. I hope some day she will come out of this
thinking. She didn't learn it from us; she learned it from peer pressure
around middle school time. I hope that she will still come and see me
from time to time and let me be a part of her life.
I have heard of situations in which having a blind child in the
family is so stressful to the family that sometimes one parent leaves or
perhaps a divorce happens. I've heard of cases in which kids were sent
to the school for the blind and pretty much left there. I think this is
really sad. I know these things happened a lot in the fifties and
sixties. I hope that parents are getting better help now. As I said
before, the sooner they have contact with the NFB, the better off they
will be. It really is important."

Laurie Merryfield (Seattle, Washington, USA)

**19. "I have been totally blind since birth and am now 36 years old. I started
learning the piano when I was three. We were living in Dunedin (New
Zealand) at this stage and we had a neighbor who had a piano and I can
vividly remember sitting on her knee while she played. I can also remember
saying to people "I'm going to play my own song now," and just making it up
and being happy.

I attended Homai College in Auckland which was a school for the blind. I
can remember the feeling of resentment and anger when my parents left me
there. I continued learning the piano by ear until I was about ten, and
then I had to learn Braille music. What a drama! It was like going back
to the beginning and starting again. My musical ear was so well developed
at this stage that as I was learning the piece from Braille, my teacher
wouldn't play me anything because she knew I would just remember it and not
learn to be musically literate. A big problem about Braille and print not
being equally available. The school was a boarding school and the music
teacher snuck up on me one day when I was improvising instead of practicing
my proper pieces. Right there and then, she banned me from playing the
piano for two weeks!! For me, that was devastating as the piano was such an
integral part of my daily life and I often had to be told to stop playing
because I loved it so much - and still do.

I always knew that I was blind and "different", but managed to use my
musical ability to fit into any situation. I went to an ordinary high
school, a private girls' school. Then I found out exactly what being
different meant. I contemplated suicide because of my blindness and the
fact that I couldn't do anything about it, and it wasn't my fault. In
fact, I am lucky to be alive. I was born three months early with a twin
brother who didn't survive. My blindness was caused by too much oxygen and
I was in a humidicrib. I don't know all the fine details, but my mother
would tell me.

Anyway I finally got my emotions in order and realized that I did want
life. One of the reasons I wanted to study music was that I thought people
wouldn't notice my blindness as much because they would all be dealing with
sound.

I did well with all that and left New Zealand in 1989 to live in Australia.
I had gone as far as I could in New Zealand and had become interested in
jazz; I played on the penultimate jazz television program in New Zealand
- it was called 'Jazz Seen'. I had learned early in life not to make my
blindness a public issue, or one for the media to sensationalize about. I
remember having a reporter from the local paper in Wellington ring me up
wanting to do a story about me, just because I had passed a music theory
exam, just like any normal kid. I said on the phone that there was nothing
to write about, but the reporter (and photographer) insisted on turning up
to do the story. By the time they arrived, I was so angry that I told them
that they were stopping me from maintaining a normal life and how dare
they? I would have been about fourteen then.

I have always remembered a line I read in a magazine. I stole it from Eddy
Thompson who was a blind jazz pianist. He always said that he preferred to
think of himself as a pianist who is blind, rather than a blind pianist.
There is a difference.

Moving to the present, I have just released a CD of solo piano, which is my
own compositions and improvisations. I was in a pub one night just before
the launch and a not very close friend said, "You won't have any problems
marketing your CD. You're a pianist, (he was a saxophone player), you're
a woman and you're blind."

Bang. That really hurt me and I eventually got over it. I didn't and
don't want to use my blindness to market my music. How a so-called friend
could be that insensitive was beyond me. It was just a severe case of the
wrong comment at the wrong time. By the way, if anyone would like a copy
of my CD, it is available through Tall Poppies which is a small Australian
label. They are on the Internet somewhere and the issue of not being able
to accurately read print material comes up again. The producer with whom I
recorded told me to get all those details out of a magazine advertisement!
The direct email address to the record company istallpoppies@moreinfo.com.au
The CD is called "Discovery" and the catalogue number is TP125.

If anyone would like to correspond with me (or has trouble getting the CD),
please feel free to send me an email. My email address isjannr@magnetic.net.au"
Jann Rutherford
(Sydney, Australia)

**20. " OK. My parents were shocked when they learned from doctors that I was deaf.
That happened when I was 3 years old. They wanted the doctors to examine me
because I never responded to sounds. As they were schoolteachers, they
quickly collected information about available educational programs for deaf
children. They never told me that I was deaf as like other Swedes, my parents
preferred to let me discover my disability myself. (Sorry, I was born in
Sweden and emigrated to the US at the age of 25). My younger brother was also
deaf. So they accepted our disability. We both were enrolled at a school for
the deaf where we for the first time developed real communication. By real
communication I mean both interpersonal and group communication. For this
reason, I a strong supporter of schools for the deaf. If those who have a
disability can acquire the same language, that is spoken one, used by society,
inclusion may be good. Many friends here in the US told me that the parents
made efforts to be sure that their children would become aware of their
disabilities. That's different from the Swedish way. OK?"

Yerker Andersson (Frederick, Maryland, USA)

**21. "I honestly don't remember being talked to about my
blindness as a child. The earliest memory I have relating to it is when I
first visited the Ohio State School for the Blind as a four-year-old We
visited the dorm where I would be staying and when I was introduced to the
house parent, I asked if she was going to be my new mommy.

The next memory I have is of actually being taken there for school. We
lived close enough that I could go home every weekend and that's what I did
for a while. I cried every time my parents left me there for about half
the year.

I don't think this is what you wanted to know but this is what I remember.

I was not permitted to do a lot of things because my parents simply didn't
think I could, or maybe more to the point didn't want to be bothered.
Although I must say as an adult, I believe my parents did the best they
could. They didn't have the role models that many parents have today so
how were they to know. My parents provided all the material things I ever
wanted and as an adult I think they did it out of guilt. How that has
effected me is a story for another time.

Although I truly believe that whenever possible parents should try to move
close to the school so that their child can come home every night, I would
not be the way I am today if I hadn't gone there. My mother was a home ec
teacher but believe me I was not one of her good students. So I was better
served by learning that skill at the school. Even then I still had a hard
time because my parents did their best to frighten me of the stove and it
worked. I still have trouble cooking today. This of course isn't good
when you have kids. And there are many other things I would have missed
out on if I had been sent to public school.

In high school I attended public school for half of the day. I didn't have
a single friend there. This was really hard considering I was fairly
well liked at the school for the blind. Although academically it was a
good experience, I really could have done without the heartache. The
public school experience is what prepared me for college. College was the
same way. I had no social life and that damn near drove me to suicide.

The only advice I have for parents of blind children is that they should
have an open mind. If their child has a desire to do something, there are
now plenty of resources out there to determine whether or not it would be
possible."

Shelley Johns (Lincoln, Nebraska, USA)

**22. " This year, I first realized I was going to be dealing with total blindness.
I was diagnosed about 20 years ago. I was, of coarse, shocked and upset and
so were members of my family. At that time it didn't seem real, like it was
someone else. I kind of put it on the back burner and life continued. Four
or five years later I was pronounced legally blind. It still didn't seem to
be that bad as my central vision was 20/20. I gave up driving and started
white cane lessons. I wanted to be prepared just in case it happened. I
even chased a rainbow by applying for treatment in Russia. Over the years
my vision narrowed to 5 degrees, although my central vision remained clear.
I kept telling people I was losing my vision and that someday I would be
totally blind, but in the back of my mind I thought it would never happen.
This past year I've noticed a thin black web effect on my right eye. It
hit! I am going blind. I'm scared, not of the loss of vision so much as of
the loss of people. So much of our communication is visual, we read body
language as much as we use speech. Without the visual it's going to be hard
to really know what's going on. Will I just sit like a bump on a log hoping
someone will stop and talk to me? Will friends think I'm to much work to
bother with? I know I'll survive and find a way, but it's terrifying. I
liked it better when I thought it wouldn't happen to me."

**23. "I had to ponder a long time about your post before I could even begin to
formulate a response. You ask how I first realized my blindness and what
role did my parents play in it? Truth is, I honestly am not sure when I
realized my blindness. I always knew I was different from others, but
when I still had light perception as a child I tried to fit in as best I
could with sighted kids. I never carried a cane around with me except to
walk to and from school. I could ride a bike for a time. I could play
video games if my face was pressed against the screen. My parents never
really came out and talked to me about my blindness because I think in
many respects, they didn't know what the hell to say. Here I was in
Kearney Nebraska, a growing town and the only blind kid around. I think
the first time it really hit home that I was different was the first year
I went to NSVH for their summer school program. I was about eight or nine
and realized that I was at this school where everyone around me used a
brailler and canes like I did. I was pretty unhappy as a kid though, like
I knew something was different but couldn't put my finger on it. My mom
dealt more with me than my dad. I also had a vision teacher who I was
close with for a while and she served as another authority figure, along
with parents and teachers. Then in about second grade, SVI entered the
picture and added more to the fire. I hated having to answer to so many
people because of my blindness. I had no real friends in school...just a
group of kids I hung out with but the relationships were always
manipulative and hurtful. I was kind of an outsider where my brothers
were concerned too. I remember my older brother telling my younger
brother one night that I was an outsider after I wouldn't do something for
him...can't remember what. I was a little shit as a kid too, you probably
remember. I lied a lot, shirked schoolwork and stole from my friends
sometimes. I would walk around doing loud and weird voices, punching my
chest or hitting other kids on the back to simulate the sounds of
fistfights I'd watch on TV or making sound effects. I put my head down a
lot, poked my eyes, did other weird habits other kids didn't do. I was a
weirdo. My only fond memories of childhood lie in the escape I could find
through television cartoons, stories and books on tape, writing my own
stories and such. I lived a lot of my life in a fantasy world and this is
probably why I did poorly in school and why I still find it hard to do
well in school today. I remember mom wanted me to be like Tom Sullivan
because he could sing, act, play golf, tell jokes and entertain. She
would always call me her little Tom Sullivan. My vision teacher would
take me to other classes sometimes to talk about my blindness to little
kids once I got older. In Junior High, I was extremely popular for the
first year because I was the cool blind guy who could be funny and was
kind of cute. Then I became a nobody and stayed that way until I
graduated from high school. My fondest memories during my teen years lie
in relationships I had with other blind kids like Shane, Amy and such.
But before them, I was fodder for another blind kid I'd rather forget and others and I was still
an easy kid to pick on and manipulate because I was lonely. I don't mean
to make my parents sound like monsters...they did the best they could and
I love them for it. They made damn sure I didn't wind up in Nebraska City
during my young years. I'm sure I wouldn't have been any happier,
probably even less so, than I was at Kearney Public Schools. I think my
parents are responsible for my turning into a somewhat stable adult with a
better outlook on life. I would not blame any evil act I performed on my
childhood, shitty as it may have been. Still, I really don't think you
want to use me as an example of how a child should be introduced to
blindness."

Ryan Osentowski (Lincoln, Nebraska, USA)

**24. "I've noticed people's reaction when I tell them about my visual problem,
and that I'm going blind. I've even been practicing telling people I'm
going blind. I've found if I practice on rank strangers, the experience
helps me later when I'm "breaking the news" to someone who isn't a rank
stranger; a friend, family member, acquaintance, or business associate. It's almost hard to get it all across to people. Almost no one is
familiar with RP, what it is and what it does. Most average people, it
just blows their mind when I tell them. So I've been working on getting
the message across more smoothly, with more understanding and less
confusion. While I'm still working on that, I have been noticing how people react,
how best to say things. Some people never really get what I'm saying,
it seems. Maybe they can't conceive it, I don't know. Other people will come right out and say something like "Oh God, that's
horrible!", my usual reply is a remorseful chuckle, and I agree, saying
"Yeah, it sucks pretty bad". I've had a few that almost couldn't believe it. They say "What do you
mean there's nothing they can do?". A lot of people seem to think,
since there are eye donations, there must be eye transplants. I give'em
the bad news. Another, after I'd made it clear that I'm going blind and there's
nothing they can do, later asked me "But when it gets real bad, you'll
get some laser surgery or something, right?" I gave him the bad news. A few people deal with it real well, and a few people go on as if I had
told them it was going to be sunny and 75 degrees tomorrow.

I spent some time with an old friend today, a co-worker I knew from my
days testing missiles at Rockwell International, over 10 years ago. I
don't suppose we've ever been close friends, but somehow we've always
stayed in touch over the years. When he learned that my vision was getting really bad, he was concerned
and wanted to hear all the information I had about my condition, but he
wasn't overly emotional about it. He took it well, understood what I
was saying, and doesn't treat me any differently than ever.

We went off together today, my friend and I, near downtown Atlanta to
run some errands and have some lunch. I forget what brought it up, my
vision is so bad it brings itself up for discussion, anyway I was
talking about trying to deal with being so visually impaired and losing
my sight.

My friend told me that he understood what I told him about my condition,
how it's progressing, and where it is going, but he couldn't imagine
what it must actually be like. He asked me if there was any way I could
describe what it's like to go through. I told him to imagine if he woke up tomorrow, and he had a visual field
of 17 degrees, everything else was dark; even the 17 degrees had little
blind spots in it. The doctors all told him there is nothing that can
be done, anywhere, that can reverse the process, and sooner or later it
will lead to complete blindness. The emotion he would feel on that day,
I feel every day of my life now. He admitted he thought it might be
something like that, but was hoping it wasn't quite that bad. He said
he thought I was handling it really well.

Too often, sleep only comes when I'm too exhausted to remain conscious
any longer, or when I can induce it with what little comforts I can
find. During those periods of sleep, I often have pleasant dreams and
restful peace, but come each morning I awake to the same nightmare, day
after day, over and over. It's such a great burden and it never lifts, but grows slowly heavier
and heavier. Some nights it's so heavy already, I wonder how I will
shoulder it when I'm blind. Perhaps the burden will be too great, and
crush me. It becomes tiresome to continuously come up with enough
strength to deal with this. But I love my family, I've always enjoyed life, uncharmed as it may be,
and I've always wanted to live a long time. Now, at 33, I expect I
could live another 30 or 40 years. I also fully expect to be blind or
completely without useful vision in 5-10 years. I had 60 degrees in
1980, 17 degrees in September 97, and I'm sure I have quite a bit less
now than I did then. It's progressing right along these last couple
years. So not only am I going blind, there's a good possibility I could be
blind for a very long time. Thirty or forty years is a long time in
terms of medical science and technology advances. If I live a long
time, there is no telling what the future might hold. Perhaps hope,
perhaps decade after decade of darkness and dependency.

They told me when I was 12 that I was going blind, I'd probably be blind
by middle age, and there was nothing anyone could do. I understood it
then and I've known it for 21 years now. For nearly 20 years, I was able
to lead a more or less normal life, but I really always knew in the back
of my mind what destiny held in it's cruel hand for me. I never really accepted it then, but I didn't deny it was happening to
me. Mostly I couldn't conceive what it would be like, to lose my vision
and live in darkness from then on. Still I cannot. I don't seek pity
or the understanding of others, but I need to find more understanding of
myself; more understanding for myself.

I've always been fairly intelligent, mostly levelheaded, and extremely
logical, but for reasons I cannot comprehend I can't seem to get my head
screwed on straight. How does one plan for a future he cannot conceive?

After telling a couple dozen strangers and maybe a dozen friends about
my degrading vision, I have found the best way for me seems to be quick
and to the point. I had to tell the man pouring our concrete driveway
today that I couldn't drive. When he asked me why not, I told him "I'm
nearly blind now. I'll be blind in a few years, and there's nothing
anyone can do about it."

I've found that while that statement hits people somewhat hard, usually
it sinks in after a moment and they understand. I don't have to explain
as much, and if they do have questions, at least they understood what I
said the first time. So far, that's the only part of this I've even started to work out.

Another late night spent searching for peace,
strength, understanding, truth;
fruitless.
So long traveled and worn,
tattered at the edges,
aged years beyond my flesh,
my soul searches.
Grasping its way in the darkness
the beacon ever dimming,
beauty and light
fading from view
slowly
fading
uncertain shadow creeps in
ever drowning the beautiful light.
The darkness, it stalks me,
on restless nights like tonight.
I keep a watchful vigilance."

Carltonn Griffin (USA)

**25. "My daughter has RP and the comments on "when I found out" were just great.
She is 15 and has 10 to 15 degrees of vision left. That is one half of what
she had one year ago. This has been the hardest year, but she is in
counseling and has made improvements. I like what # 14 said and the last
person. I don't really know what my daughter thinks each day that she is
waking up. I hope that she thinks great one more day of vision. I do not
know any adult role models, but we did go to the RP convention this summer.
We plan to go to the next one this year. Thanks for having the web site. It
helped to hear what others are thinking. I always thought that my parents
did not really give me much insight into what I would experience as an adult,
but it is very hard trying to give my ! daughter some ideas on what she is to
become or expect from life. I hope that she will embraces it with as much
joy as anyone else. Thanks"

**26. "I was born totally blind and I do not remember when the whole concept first hit me. I do, however, remember me asking my Mother if other children could see or not. I guess I figured that there were many more blind children around. I was always a bit amazed when Mom told me that all the other kids could see. I couldn't understand why I was the only one.
Cheers"

Chris Judge (NABS)

**27. I was also born blind. I remember having many questions about it, but once I understood it, I was okay with it. "

Lisa (NABS)

**28. " In response to this thought provoker, I have found that there were many people like me who questioned how they fit into the world around them. In relating to those who were born blind or went blind at a very early age, I was born blind but have light perception. Like many who have light perception, I only
thought of blindness as not being able to see anything; degrees of blindness or visual impairment never occurred to me. So, since I could see light and
colors, I thought that I was actually sighted. It wasn't until I was about five or six years old when I was outside on a bright sunny day with an adult who ran the orphanage I grew up in (I'm adopted) that a plane happened to fly overhead. The adult said to me, "look up in the sky. There's a plane". I looked up but couldn't figure out what they were talking about, as I couldn't see what they were pointing at; I could only hear it. I didn't know exactly what to think other than, "why is it that they can see the plane but I cannot?" I didn't verbally question it so as not to sound weird with my question, so my pondering sat on the back burner until I was eight years old, when I was finally adopted and came here to the States. In the meantime, I would hold
the prayer book open in church to wherever I thought everyone else was reading. I learned a little Braille at the school for the blind while I was still there in the Philippines, but, again, I just figured that Braille was just another kind of book everyone read. There was only one blind employee there who used a cane, but I never thought anything about it, as students did not have canes to get around.
At age eight, shortly after I arrived here to the States, my adopted mother and I happened to be going someplace in her car when I asked how old one
had to be to be able to drive. She told me that you had to be sixteen to drive and that you to have a license. Getting excited and calculating the fact that I had eight years before I could finally drive, she stopped me in the midst and broke the news to me, "Linda, you won't be able to drive". Suddenly
quiet and stunned, I didn't know what to say other than thought, "well, then, how am I going to go places like everyone else? Certainly I cannot walk hundreds of miles!" My mothered, likewise, sat stunned, as she thought I knew that I was blind and that I understood the implications. Finally asking
her this, she told me about the city buses that passed by our house everyday, and how many people ride those buses instead of drive. Resolving that, I didn't go any further with the driving issue or taking the bus, as it seemed like a satisfactory answer to me. It wasn't until I was twelve years old
when the issue about taking the bus resurfaced.
At twelve years old, my mother (she and my father were divorced by then) and my mobility instructor agreed that I should start learning how to use the city bus system. So, one day, my mobility instructor told me this, which rekindled that incident in my mother's car four years previous. Not only was I scared at the idea, as I didn't know how I was going to know when I arrived at my stop, but I began to wonder whether only blind people rode the bus. Asking my instructor this, I learned that sighted people, and people of all kinds, ride the buses for one reason or another. Now, it wasn't that I didn't
want to be associated with other blind people anymore, but I did not want to be singled out either in the public eye. well, I learned all the tricks of the trade of the buses and other accommodations in other areas.
Before this incident of first learning how to use the bus, though, my mother took me to the university ophthalmology clinic at age ten to learn more about my blindness--whether it was congenital or hereditary, and what may have caused the blindness. At that appointment was when I found out that my
blindness was congenital and hereditary. Okay, not a problem since I was already blind and any children I would have would not have been a burden if they, too, were blind. They would not have been a burden anyway regardless of what handicap for that matter, but blindness is the topic at hand here. Anyway, the kicker at the appointment was when I was told that, because of my glaucoma, there was a likelihood that my remaining sight would deteriorate
slowly over a long period of time to the point of no light perception whatsoever. Though it scared me initially to think that the little sight I was relying on would, one day, disappear, that fear disappeared over time when I started learning from NFB members the importance of learning how to travel without light perception even though I still had light perception. I've never had training under sleep shades, but I started teaching myself to use more of my audible cues in conjunction with the very little sight I still have. Thus, using the God-given gift I was born with a heavy focus on using my auditory
cues.

On the flipside of understanding more about my own blindness and adjusting to the information I was given over the years is helping other newly blind people adjust as well. My husband, John, is such a person currently in my life who is learning to adjust to his slowly deteriorating sight due to diabetes just by watching me function daily. When John and I first got together seven years ago was when I learned that he was color blind. I told him, "that's
no problem because that makes the two of us trying to figure out what color is what." (I can still see some colors but not as well as I used to even thirteen
years ago.) Anyway, in our continuing conversation about blindness, which continues still to this day, he asked me, and still asks me, the usual questions of "how am I going to get around? How am I going to do the things I do now?", etc. Thinking about his questions and reflecting on my own personal experiences
related above, I could not just say, "well, you just do what you always did". For one thing, it would not have been a very sensitive response, and just doing what you do normally now as a blind person goes beyond just that simplicity in that you have to make things adaptive to your functioning-things on cassette or in Braille, talking clocks and calculators, a speech screen reader to use a computer, using auditory cues in orienting yourself, etc. Instead,
I just explained the basics and let him watch me do what I do and how I do what I do. Ther are still some things that are hard for him to grapple from time to time--not being able to see pictures or what someone looks like--but I constantly assure him that I go by one's voice to get a mental picture of a person. I further constantly go on to explain that looks are deceiving in that, one's appearance may porport them to be insensitive because they have
a hardened appearance to their features when they are actually a very sensitive person underneath those physical features. One thing that I have learned from my own experiences and in helping John adjust to the impending idea of being totally blind is to let the person adjusting adjust at their own pace. Let them ask as many questions as they can throw at you, and, as Resp. 5 stated, answer their questions from their point of view with sensitivity rather than being callous. To push them only results in the bitterness and feeling rushed to the point that you cannot get through
to the person adjusting to help them."

Linda (USA)

**29. To me, this goes back to the issue of adjustment. I for one have been blind since birth, and I am now 30. I think I've adjusted to blindness extremely well
with the exception of unemployment, but that's another story. I constantly hear things about how people shouldn't be depressed and grieving their loss
of vision. My opinion is that grieving is okay. Not everybody is happy about losing their vision, particularly those who lose their vision later in life.
I'm always shocked when I hear that those who grieve should just get on with their lives and stop worrying about their visual impairment and what others
will think of them.
This brings to mind the question of affiliation in one or both of the blindness organizations. The former director of a rehab-training center here in Chicago
which I attended, was a member of both the American Council of the Blind and the National Federation of the Blind. He has since passed away, but I wish
I could of asked him what it was like being a member of both organizations at once. He held a discussion group called Blindness Issues in which he mentioned
being a member of both, but he never went into detail about it.
I have never been a member of either the NFB or the ACB. However, I would think there'd be conflicting viewpoints. The one organization, it seems, takes
the view that blindness of any degree is okay, and that feeling depressed about it is also okay. While the other organization also believes blindness is
okay, it seems to me that they think nobody should ever feel even the slightest sense of embarrassment and sadness about their blindness.
In another Thought Provoker I mentioned that I read the book "People of Vision: A History of the American Council of the Blind." I can only imagine what
it must have been like during the "Civil War," as it is termed. I have not yet read "Walking Alone and Marching Together," but I hope to do that when my
computer gets fixed.